Friday, 31 March 2017

Autism and Optimism - Now He Knows

With World Autism Awareness Day approaching on April 2nd, I thought this would be a good time for an update on autism in our house. Also, if you are wondering how you can pledge some support to Team Ottawa Senators, the team we have created for the upcoming Autism Speaks walk in Ottawa, keep reading to find out. :)

It has been five years since Leo has been diagnosed with Autism Spectrum Disorder (ASD). This is the first blog entry I have written since Leo has learned he has autism.

The night that I told Leo he is on the spectrum was not planned. I had no idea I was going to do it until I did it. I had spent a lot of time thinking about telling him. But the actual monumental moment in the Groulx household — at the dinner table with Leo’s twin brother Eli — was unexpected.

The boys were telling me about their school, explaining how some children need to take body breaks. This got my attention and I listened attentively as my kids explained to me that sometimes kids at school take breaks in order to, as we call it in our house, get the beans out. To get them moving so that when they return to class, they are able to focus.

I quickly sensed that this was my opportunity. It was the perfect time to talk about how everyone has different strengths and weaknesses. And how everyone has different needs.

Before I could talk myself out of it, I told the twins about autism. I told them it was a developmental brain disorder that impacts people in different ways. I listed a few of the attributes that Leo demonstrates. I said that it could mean that some people jump up and down and flap their arms. It could mean that some people are bothered by loud noises. It could mean that some people have trouble fitting in with their friends when they can’t find the right words to use. I asked if that sounded like anyone they know.

Just as Eli said it sounded like Leo, Leo said, “Hey! That sounds like me!”

I said, “That’s because you, Leo, have Autism Spectrum Disorder.” 

And there it was. I said the words out loud. There was no going back now.

We talked for a few minutes about how ASD means Leo’s brain works a little differently than others — not worse, not better. Just differently. 

I pointed out to him that is why the noise of a hockey game, or an assembly at school, or an overly aggressive bird at a zoo (Leo and swans DO NOT get along), seem to bother him more than others. I pointed out to him that is why joining in with a group of friends can be a bit tricky for him. I pointed out to him that is why he is so bothered by some smells that the rest of the family has to eat certain foods in a Leo-less room.

The Family Groulx, at a zoo, avoiding any squawking birds.

A lot of good came from that conversation. I think it has given him some understanding as to why he feels the way that he does at certain times. It has also given PG and I the freedom to ask questions that we wouldn’t have asked before.

Now when we see him jumping up and down, we feel it is okay to ask him what he is thinking about it. We say, “Leo, we see you are jumping. That is from the autism and that must mean you are thinking something exciting or something is bothering you. Will you tell us about it?” Sometimes he happily tells us what he is thinking. Other times he says it is something he would like to keep private, which is just his polite way of telling us to mind our own business. We don’t pry but are thankful for the opportunity to ask the question now.

Leo is attending his third elementary school (he is in grade two) and living in his sixth house. Considering that most people with ASD thrive on routine and consistency, this kid is adjusting like a champion. He likes his teachers, he is doing well in school, and he has made friends. We are pleased and proud.

Leo, all smiles, after getting through a hair cut with no tears. We celebrate the small victories.
But that does not mean we haven’t hit some bumps along the way. In an emotional moment for me earlier this year, I looked at Leo one night at Applied Behaviour Analysis (ABA) therapy, sitting amongst a group of children who were also on the spectrum, and for the first time ever, I saw that he truly belonged in that group. It hit me like a ton of bricks.

I have only come to fully realize recently, that no matter how hard Leo works, no matter how hard I work to help him, Leo will always be on the spectrum. There is nothing I can do to change that. It is something that I thought I understood the moment he was diagnosed. But I found the moment that it truly sunk in - five years after the diagnosis - to be an emotional one. It felt like a punch in the gut.

The latest challenge for Leo definitely falls under the social interaction category. He feels attacked when something appears to be done to him. Any little thing. He gets bumped in the hallway — they did it on purpose. Someone takes a sheet of paper that Leo thinks is his — how dare they? Someone beats him in a game — how could they do this to him? Things are blown wildly out of proportion and result in Leo crying and sometimes refusing to take part in an activity.

When this happens at school, it can be distracting for the class and a disruption for the teacher. 

When I get word from Leo’s teacher that one of these incidents has occurred, then Leo and I review information we have collected from ABA, or read some social stories we have at home, that address the current issue.

We have material we regularly review on how to be a good friend. We have a book we read, that Leo's Grandma bought him, that talks about what to do with a problem. We have material we regularly review on determining the size of a problem. This is a big one for Leo right now. We are trying to get him to understand the difference between small, medium and large-sized problems and how his reaction to the problem should be in relation to the size of the problem. (“No, Leo, that person accidentally bumping you while putting on their coat next to you is not a gigantic problem.”)

Another tool his teachers use at school, and we use at home as well, is Kelso’s Choice. This tool is part of some elementary school curriculums and aims to give students the power to do their own conflict management. It is also a great tool for any child on the spectrum. Leo has a little laminated circle that he can carry around with him, depicting Kelso the frog choosing different ways to solve a problem. The goal is to get children to review their choices and then choose an appropriate response to their current conflict.  Responses include “Wait and Cool Off”, “Walk Away”, “Apologize”, “Share and Take Turns."

Leo was recognized by his teacher a few weeks ago for using Kelso’s Choice — he was so proud. Speaking of teachers, we have a couple of great ones this year. As I have said, I know that Leo’s behaviour can be distracting for others and it is so important how a teacher handles the situation.

His homeroom teacher, who instructs him in English (he has French classes in the afternoon) told me a story that I love. It not only provides a snapshot of Leo’s brain and how literally he is taking words right now (we have been learning about figures of speech at home) but it also speaks to what a fantastic teacher he has.

In December, the boys’ teacher gave the twins’ class a writing assignment. They were to write about why they would like to be a gingerbread cookie. While the rest of the class started their assignment, Leo refused. His teacher sat with him and tried to encourage him to brainstorm some ideas for the assignment but he remained steadfast in his refusal. Then his teacher recalled a conversation she previously had with me, where I told her that he is taking things literally. We try to avoid phrases like “in a minute” or “just a second” in our house.

So his teacher had an idea. She asked Leo if he would like to write about NOT wanting to be a gingerbread cookie.  He said yes and picked up his pencil and started writing. I love this story. I can picture Leo, confused, and not wanting to write about being something that ultimately gets eaten.

But what really stands out to me in this story is the teacher. She took a minute. She sat down with him. She recalled information I had told her. She understood how he felt about the assignment and by changing the instructions, she ultimately got him to do the assignment. With another teacher, he might have been seen as misbehaving. I am so thankful that she is his teacher and has found a way to reach Leo more often than not.

I can’t really say enough about the twins’ school this year. Both of Leo’s teachers do not let him use autism as an excuse. PG and I are so thankful for that. When there is indoor recess, the noise regularly causes Leo to make his way to the office, where he eats his lunch. He is welcomed, and made to feel safe, by the office administrator, principal and vice-principal. PG and I are so thankful for that.

The chair of the parent council asked me to help with an autism awareness bulletin board for autism awareness month (April) and connected me with another parent who also has a child on the spectrum. I am so thankful for that. 
Autism bulletin boards at the boys' school.

The school’s principal carefully considered what message he wants the students to hear when the school marks World Autism Awareness Day. (As of the writing of this blog, he was considering using this video to help educate the children.) PG and I are so thankful for that.

And the boys’ school is going to hold its own autism walk, donating some of the proceeds of that walk to the Ottawa Senators Team, as registered for the Ottawa area Autism Speaks walk. PG and I are so thankful for that.

This year’s Ottawa Autism Speaks walk will be held the morning on June 4, at the Bell Sensplex in Kanata. PG and I previously fundraised for the Montreal walk when he was with the Canadiens. Now that he is the goaltending coach for the Ottawa Senators, we would like to once again do our part to help promote autism research and encourage awareness and compassion.

Leo is a high-functioning, thriving boy. We are so thankful for how far he has come. We know we have current challenges, and we will face more in the future. But we consider ourselves fortunate. We know that families who have members who fall at different places on the autism spectrum, face many different kinds of challenges. We choose to walk for them. We choose to walk for Leo.

Please consider donating to help positively impact the autism community.

You can visit our Ottawa Senators Team page and you can make a donation by visiting this page: 

To any of our Ottawa-area friends, family, and neighbours, who would like to donate and/or walk with our family on June 4th, please visit the this page and click “Join Wendy's Team” in order to register for the walk. We would love to see you there!

Finally, please share this blog post, or the donation information, to encourage anyone who has the inclination and the means to pledge our walk for Autism Speaks. We really appreciate your support.

Here is my favourite story from the night I told Leo that he has ASD. I asked him if he had any questions as he was leaving the dinner table to go play. I will never forget his answer. He happily said, “Nope - I am good. My brain has optimism.”

I eventually got around to correcting him. But at that moment, I just smiled and said, “My brain has optimism too, Leo.”